Our journey through leukemia

Kirk took Connor to the clinic yesterday. It was busy, and therefore slow. They did blood work to check his enzymes again, but we already know they are elevated because Connor is in pain again. He's managed the last 24 hours with Tylenol, and lots of laying down. The pain seems to lessen when he's at least partially laying down. Tomorrow is the last asperagenase shot, hopefully for awhile. It's the end of the 2nd phase, so he's scheduled for a bone marrow test on Monday morning.  We have no information on what the next phase brings as of now. They'll confirm after the bone marrow results. They did assure me that he can be off on Tuesday for his birthday 🎉.  Here's hoping that 2021 brings continued remission 🧡 Best wishes to all our family and friends for the new year.

Christmas day went smoothly at the hospital. Didn't take much longer than a clinic day, thankfully it was fairly quiet. We had a nice relaxing weekend with lots of days hanging around in our Xmas jammies!  Connor is back in the clinic today for the start of his last week of asparaginase shots. His hemoglobin is low again today so rather than wait for the type and cross for blood, we are adding another clinic day tomorrow and they are planning to give him 3 units of blood.  Not ideal, but better than being here until 7pm tonight.

Merry Christmas 🎄 We opened our gifts this morning, in anticipation of Connor bring in the hospital tomorrow. Fairly quiet week. Connor started the asperagenase leg shots on Monday again. His hemoglobin was fairly stable this week, but he needed platelets on Wed, so Kirk and Connor had a longer day. I stayed home to prep our turkey for Christmas Eve dinner. We had a great dinner, played Pandemic (very 2020 of us!). And we've had a great "Christmas" morning! Our tradition is to stay in our jammies and eat leftovers for dinner!!

We made it to the clinic despite the snow (we didn't get nearly as much as they were forecasting!) Thursday was quiet, but everyone rescheduled for Friday. Connor had to be there both days! Friday was so busy we never got to a chair! They kept us in the intake room, and out of the way.  Luckily his blood work was okay, so after a couple hours wait, we got the injection he needed and headed out.   Next week is back to the asperagenase leg shots on Monday, Wednesday, and Friday. Hopefully it won't exasperate the pancreatitis again.  In the meantime Connor is tired in the evenings, but otherwise feeling good.  This is him Friday in the intake room, on a meeting with a teacher. Working wherever he needs to!

Long day yesterday! After a great weekend of "normal" Connor needed two units of blood yesterday. Unfortunately the blood bank took forever to type and match (no, his blood type doesn't change, but they are required to type and match each time!) So they didn't start the three hour infusion until after 2pm (we got to the clinic at 10:30am).  We didn't want to do one of the units today because the Northeast is under a snow storm warning. We are expecting anywhere from 12"-24" in the next 30 hours. Kirk is taking Connor today for a hopefully quick appointment before the storm starts, and back again Thursday later in the afternoon, hopefully after it ends!! They won't take blood and run numbers again until Friday.  His pancreas enzymes were back in normal range (likely why he was feeling better) so hopefully it won't kick back up again when he starts asparaginase again next week.  Hopefully the only event this week will be the snow and the controvers...

 Connor is feeling better this weekend.  We decorated our gingerbread beach resort yesterday, and Connor was able to participate without getting too tired, he had no pain, and (oops) ate way too much candy!  It felt normal and it was totally worth it! Still feeling good today, so he made egg bagels with his Dad and watched a movie.  Loving the "normal" and we'll take whatever part of that we can get.

A fairly uneventful week until today. Connor woke with some upper GI pain, so we did some extra blood work. Thankfully his hemoglobin is holding up, but his pancreas is complaining. His Lipase enzyme is double the normal level so we are downstairs at radiology waiting for an ultrasound. It looks like the beginning of pancreatitis, so switching to low fat diet, and hoping that symptoms don't get worse this weekend to land him in the hospital. Likely caused by the asperagenase (the leg shots) so it may end up that he can't tolerate that chemo in any form.  While they don't like to deviate from the proven treatments, we will be keeping a close eye on this as we go forward. Thankful to our doctors who text their peers to get our appointments fast-tracked!!

Great news! Connor has surprised everyone and his numbers have bounced right back up again! Which means his body is fighting hard and working on being healthy.   We'll start the next round of this phase tomorrow. It's similar to last round, without the spinal taps.  Tomorrow is a hydration day, which means we're at the clinic for a long day, with overnight hydration again.  Then here every day for the one chemo that just gets pushed in, so should be in and out in 45 minutes. For anyone keeping track from this past phase, it does unfortunately have him getting the PEG alternative in two weeks, 6 more times, including Christmas and New Years Day. Because the clinic is closed on those days, he'll do a short-term admit at the Children's hospital. So it'll mean several hours in the hospital both those days.  We will likely plan to push our Christmas up, celebrating Christmas Eve on the 23rd and open presents on the 24th!! After all, it's just a date on the calend...

No changes. Connor is still tired, not hungry, and now has acid reflux (but not eating?)  He got leg shots again, one set more on Monday for this round. His counts are still low, it's unlikely we'll start the next phase on time. Nothing we can do but wait. We'll know for sure with blood test on Monday. On positive news, we got our Christmas tree yesterday. I didn't even get one argument about the Santa hats! Have a good weekend everyone!

Monday went well, sorry I didn't update. His Hemoglobin came up and he only needed one unit of blood. He got his last spinal tap in this phase, and the new shots seem to be going okay. Last night Connor was extra tired and had no appetite (very unusual for Connor, but not for a chemo patient!). He tried to eat some oatmeal this morning, but still wasn't interested in food. Today his blood sugar is up again, so we need to test his blood for the next 24 hrs, and if it doesn't come down we head back to the Endocrinologist. (Or at least check in with her!) His Bilirubin is also elevated, so they are keeping an eye on it, but other liver function tests seem okay right now. His white cell count is down to 1.31, down from 2.2 on Monday. His ANC is down to .38, and needs to be .7 to start the next phase on Monday. So his numbers aren't looking great, but they are totally expected, and not especially concerning. While I'm not interested in delaying treatment, I am not unhapp...